mixed multiple mullerian tumor of the ovary

I had 2 large ovarian tumors removed in a hysterectomy and was successfully debulked to less that 1 cm of tumor left. That was followed with 25 radiation treatments and 6 chemo treatments of carboplatin and taxol.I tolerated all treatments well and feel as if the cancer is gone. I am concerned that the only test that my oncologist will do is a Ca 125 every 3 months as well as a vaginal exam. They tell me that if the cancer reappears it is there to stay. Statistically speaking, I have a 20 % chance of cure but I can not find any evidence that anyone actually survives mmmt. I also realize that repeated ct scans expose me to more radiation which can cause other problems. I honestly think that the doctors feel that it will come back but want me to have less anxiety about it and they know that anxiety is linked with tests so they are reducing the tests.  Has anyone else had this experience or at the very least is there anyone who has passed the 5 year point?

I have carcinosarcoma as well.  I too had a CA125 and a pelvic exam every three months, but in addition a CT scan at six months.  Unfortunately, the 6 month scan picked up multiple metastatic lesions in my lungs.  I've had no pelvic recurrence. 

My oncologist believes the pulmonary metastasis that I have experienced is due to the fact that my initial diagnosis was caught at Stage IA with no pelvic metastases.  It's more likely I guess that recurrence for you would be pelvic -- and I don't know if a CT scan is as necessary for early detection of recurrence in the pelvis or abdomen, where MMMTs usually recur.

I think you should consider doing everything you can to  build your immune system and stay in remission.  Reduce stress, get a good eight hours sleep every night and lead as balanced and happy a lifestyle as possible.  There is good evidence to consider adopting a vegan diet (though I have modified mine to include fish and goat yogurt.)

Do not let your doctors write you off.  My oncologist has had two women with carcinosarcoma recur and then survive beyond five years and be declared cancer free. 

I am having a tough time getting to remission since my recurrence but am not giving up hope.  After my recurrence, I had a great response to carboplatin and taxol for two cycles, then the tumors in my lungs stopped responding and one actually increased by .4 centimeters.  Now I'm on gemzar and taxotere.

I sure hope you have no recurrence!

 

On 12/31/2008 Sunnys Mom wrote:

I have carcinosarcoma as well.  I too had a CA125 and a pelvic exam every three months, but in addition a CT scan at six months.  Unfortunately, the 6 month scan picked up multiple metastatic lesions in my lungs.  I've had no pelvic recurrence. 

My oncologist believes the pulmonary metastasis that I have experienced is due to the fact that my initial diagnosis was caught at Stage IA with no pelvic metastases.  It's more likely I guess that recurrence for you would be pelvic -- and I don't know if a CT scan is as necessary for early detection of recurrence in the pelvis or abdomen, where MMMTs usually recur.

I think you should consider doing everything you can to  build your immune system and stay in remission.  Reduce stress, get a good eight hours sleep every night and lead as balanced and happy a lifestyle as possible.  There is good evidence to consider adopting a vegan diet (though I have modified mine to include fish and goat yogurt.)

Do not let your doctors write you off.  My oncologist has had two women with carcinosarcoma recur and then survive beyond five years and be declared cancer free. 

I am having a tough time getting to remission since my recurrence but am not giving up hope.  After my recurrence, I had a great response to carboplatin and taxol for two cycles, then the tumors in my lungs stopped responding and one actually increased by .4 centimeters.  Now I'm on gemzar and taxotere.

I sure hope you have no recurrence!

Thank you so much for responding so soon. I would like to keep in touch with you if you wouldn't mind. I have never been able to talk to an actual person who has had this disease. It seems that everyone dies. My cancer was staged at 2B because it had metastasized to the other ovary. Did you have radiation too?

 

On 12/31/2008 Christy wrote:

I had 2 large ovarian tumors removed in a hysterectomy and was successfully debulked to less that 1 cm of tumor left. That was followed with 25 radiation treatments and 6 chemo treatments of carboplatin and taxol.I tolerated all treatments well and feel as if the cancer is gone. I am concerned that the only test that my oncologist will do is a Ca 125 every 3 months as well as a vaginal exam. They tell me that if the cancer reappears it is there to stay. Statistically speaking, I have a 20 % chance of cure but I can not find any evidence that anyone actually survives mmmt. I also realize that repeated ct scans expose me to more radiation which can cause other problems. I honestly think that the doctors feel that it will come back but want me to have less anxiety about it and they know that anxiety is linked with tests so they are reducing the tests.  Has anyone else had this experience or at the very least is there anyone who has passed the 5 year point?

Hi Christy,

I've been fortunate enough to have passed the five-year mark.  My ovarian cancer was discovered in August of 2000 and I'm still here.  Now I know what they mean by "a long battle with cancer."  I've gone through three oncologists.  I've had a hysterectomy, about five types of chemo, radiation, hair loss, surgery for five recurrences, surgery for a bowel obstruction, and now, the large tumor and multiple smaller ones I mentioned in my post.  My onc says my only options left are Gemzar or Doxil, and I am to the point where I'm tired of chemo and don't believe it would do any good..  I just want to have the protruding portion of the tumor removed so I can have a better quality of life for the time I have left.

Best of luck to you, and I hope your body is able to keep fighting your battle.

Fran

Ladies,

 

There is a wonderful yahoo list dedicated to ovarian and uterine carcinosarcoma - women who are fighting the battle and their loved ones.  There are members all over the US and from around the world.  This is a wonderful resource for information and support.  Come and check it out - you sign up by going to yahoo.com and then searching on yahoo lists - type in the key word carcinosarcoma and you will find the list.See you soon!

 

Christiane in OR

I was diagnosed with cansinosarcoma of the ovary 2 years 7 months at stage 2B. Had surgery and 6 rounds of carbo and taxol with a recurrence at 14 months after surgery. Because my gyn/onc wanted to turn to pallitive care, I looked for another doctor who would try surgery again. I went to a larger teaching hospital and had surgery and radiation. I am now at 16 months from the second surgery and just had a good check up.

 My doctor thinks I have a kind tumor that doesn't want to leave the pelvic area and, if it returns again, that's where it will return. He is hopeful that I have had my last recurrence because my second remission has been longer than the first which is not the usual.

God Bless you all, Nancy